NewsLine - December 2011 - (Page 20)

continued from previous page Finding Their Voice: Helping the Person with Intellectual Disabilities Grieve By Diane Snyder Cowan, MA, MT-BC, and Rex Allen, MA From an early age, Vicky’s personal relationships were often fraught with behaviors that made it challenging for others who knew her to remain engaged and active in her life. Angry outbursts, sometimes punctuated with physical violence, helped create a world characterized by isolation. As a woman in her mid-30s with an intellectual disability, she had lived most of her life in her parent’s home. While her mother had been her primary caregiver, it was her loving grandfather, Tom, who broke the walls of her isolation with his unconditional acceptance of who she was. When Tom was diagnosed with a life-limiting illness, Vicky soon found her one place of refuge disappearing. The family as the unit of care has long been the foundational philosophy of hospice service. The unique needs of each patient and their family are assessed with an eye toward individualized service that is ultimately as multi-faceted as the family system it serves. When that system includes individuals who may have been disenfranchised due to a developmental disability, hospice programs are offered the opportunity to help build bridges of understanding in powerful and life-changing ways. Developmental disabilities is an umbrella term that covers a spectrum of mental and physical limitations, including intellectual disabilities, cerebral palsy, autism, neurological impairments, and epilepsy. Historically, the term “mental retardation” was used; today the accepted terminology to identify this population is “intellectual disability.” Intellectual disabilities (ID) are characterized by severe limitations in intellectual functioning and adaptive behavior. An IQ score of 7075 indicates a limitation in intellectual functioning. Adaptive behavior includes conceptual, social and practical skills. To be considered a developmental disability, the condition must occur before age 18. As the hospice team individualizes its care plan to include the needs of a family member with an ID, it becomes important for the team to understand that no two people experience disability in the same way. The unique personality of the person, their history of support, and their life experience will all be factors in determining how best to serve them. Prior to her grandfather’s diagnosis, Vicky’s parents had placed her in a residential home. Her father was ill, and 20 NewsLine

Table of Contents for the Digital Edition of NewsLine - December 2011

Working With Modern Families
A Message From Don
Regaining Trust
Need Compliance Answers? (display ad)
Hospice in the Continuum
New Community Assessment Tool
The Voice of NCHPP
Helping the Person With Intellectual Disabilities Grieve
Bereavement Professional Monthly Chats
Recruiting Problems? HMR (display ad)
We Earned Our Merit Badge in Efficiency (display ad)
NHPCO Honors Hospice Service
Are POLST Registries Part of Our Future?
Virtual Conference for Volunteers and Volunteer Managers
Winning Entries from 2011 Creative Arts Contest
Delta Care Rx (display ad)
Member News and Notes
Regulatory Tip of the Month
Educational Offerings
A New Way to Support Hospice
FHSSA Newsletter

NewsLine - December 2011